Peripheral T cell NOS Non Hodgkins lymphoma

michellelemon said:

Thanks for support

Sorry - I am not sure why that last post posted twice? But yes, my Dad continues to be cancer free  - good news in and of itself! And yes, it is clear that the high dose chemo did him no favors with his knee joint issues, but we have to realize, little price paid comparatively.  He desires to live in the post-cancer world -of which I do not blame him! But I am aware of what occurred and I want to continue to be a voice of hope!   Frankly, he actually remembers little of his sojourn with the stem cell transplant. It just knocked him out that much - they bring you to almost zero of all counts of anything life sustaining but then bring you back up with the introduction of  the healthy cells. Fascinating stuff! But, as I began this all feeling hopeless, helpless and confused, I am so happy to offer hope for others!

Michelle,

I used drugs different from your dad's, but many chemos do aggrevate arthritis, at least temporarily. Rituxan and WBC boosters (neulasta and the others) are especiually notorious for this.  I did chemo with severe arthritis, bone ossification from 18 fractures, and a broken back from years earlier, but got through it. I was younger (53) at the time, but it can be done.  At first the neulasta almost put me in the hospital, but the doc cut the subsequent doses to a fraction, and it still worked fine, and with only minimal pain.  Bless you and your dad,

max

michellelemon said:

Hi, Mallory's mom

Glad to hear Mallory is gaining back strenght but not sure about the headaches, poor thing! My Dad did not seem to have that particular side effect, but plenty of others and they are probably different for all, depending on age and gender. I am glad that the doctors are treating this symptom and encourage you to be persistent about finding relief for her. Please keep me posted! Prayers!

Mallory is improving. Continues to have headaches,but less frequently. Had petscan and bone marrow biopsy 100 days post transplant. Biopsy was negative. Scan showed slight activity in lymp node in her neck. Doctor feels this is probably ok. I pray she is right. We are thankful for your continued attention to this site. It is great to here about someone like your dad. You are a blessing!

soldierup63h said:

ice

Hello guys I have read your comments.. I am 25 years old and was diagnosed with peripheral t cell lymphoma unspecified.. I am in the Army and due to misdiagnosis over and over again, I was diagnosed at stage IV. My doctor sent me to MD Anderson. I was diagnosed in November 6 2012 at the age of 24 and the same day I did CHOP. I responded well and then stop responding.. I did finish all 6 rounds though, after not being cured I did GEMOX, I have been doing GEMOX for 3 cycles and my tumors in my liver disappeared but it didnt knock the cancer from my bone marrow. Tomorrow I get admitted to the hospital and I am going to do ICE, I have had so many set backs with this battle and it is emotionally draining. I feel normal now and I know that ICE will take a toll, I guess we will just see, it is nice to see that your dad is doing well, I am a candidate for an allo Stem cell transplant as well but they are still looking for donors because I have a rare marker in my hla, as rare as this cancer. I hope and pray that I follow yor dads path and mallorys path as well, have a great day guys.

Prayers for you. Are you seeing a lymphoma specialist? Mallory's doctor is Julie Vose,MD at The Nebraska Medical Center in Omaha,NE. She specializes in treatment of T cell lymphoma. Mallory is in a clinical trial using Pralotrexate. From everything I've read you really need a specialist. Don't be afraid to advocate for yourself. Most doctors are gifted and intelligent people, but they cannot have every answer and they have many patients. You must push to get the very best care for yourself! Stay strong. You are not alone in this fight. Please stay in touch.

soldierup63h said:

ice

Hello guys I have read your comments.. I am 25 years old and was diagnosed with peripheral t cell lymphoma unspecified.. I am in the Army and due to misdiagnosis over and over again, I was diagnosed at stage IV. My doctor sent me to MD Anderson. I was diagnosed in November 6 2012 at the age of 24 and the same day I did CHOP. I responded well and then stop responding.. I did finish all 6 rounds though, after not being cured I did GEMOX, I have been doing GEMOX for 3 cycles and my tumors in my liver disappeared but it didnt knock the cancer from my bone marrow. Tomorrow I get admitted to the hospital and I am going to do ICE, I have had so many set backs with this battle and it is emotionally draining. I feel normal now and I know that ICE will take a toll, I guess we will just see, it is nice to see that your dad is doing well, I am a candidate for an allo Stem cell transplant as well but they are still looking for donors because I have a rare marker in my hla, as rare as this cancer. I hope and pray that I follow yor dads path and mallorys path as well, have a great day guys.

My PTCL-NOS was highly resistant to chemotherapy. I was also mis-diagnosed and was finally at stage IV with "innumerable" nodes and bone marrow involvement. At Fred Hutchinson, I had four cycles of CHOEP-14 and four cycles of GND back to back and it relapsed immediately when my health was too poor to receive any more chemo. I was offered a clinical trial of a drug in the category known as HDAC Inhibitors. The drug Romidepsin (Istodax) and it put me in remission. There has been no sign of the lymphoma for just over four years now, and I continue in treatment with the drug. Romidepsin's toxicity is quite low and there is one man who has received it for 5 years now. I am right behind him at 4+ years (54 twenty-eight day cycles).

Here is a T-Cell Presentation that is worth watching. The doctor is a T-Cell Lymphoma specialist at Fred Hutchinsdon and I credit him with saving my life twice now. 

http://www.presentme.com/audio2012/20121111LRFShustov/

Praying that this will turn out to be nothing serious. I understand though why you are concerned. What did the oncologist say? Please give your dad a hug and keep us updated.

rabdoog said:

questions...

Hi ..my name is Cathy.  I was diagnosed with PTCL NOS in July of '12 and did 6 rds of CHOP...2 mos. late it was back.  I am being treated at Cancer Center of America in Zion, IL.  they tried ICE on me in plans of a SCT, but I couldn't rebound from the ICE, so I only got 2 treatments.  In March I started on the Romidepsin.  I couldn't have it on the normal schedule as my platelets always run in the 20Ks, so I have it about ev. 2 - 3 wks.  My question is...

how often do you have your treatments?? How often do you get a petscan or a ct?  Another question is .... how do I find responses to my replies?  I repled to someone else and have no idea of where to find his reply.

  Thank you...and God's best.I also am doing a protocal out of a book called Cancer Free, by Bill Henderson.  It is a lot of immune boosters, vitamins and a mostly vegan diet, but also no sugar, dairy or gluten.

  Thank you...and God's best.

Hey, Cathy! Not surprising that it relapsed immediately. CHOP is a real hit or miss regimen - but there is no recommendation for PTCL. I had dose intensive CHOP plus Etoposide (CHOEP) for four cycles, followed immediately by four cycles of GND (Gemzer, Navelbine and Pegylated Liposomal Doxorubicin). Mine relapsed immediately, as well. That is when the clinical trial of Romidepsin (Istodax) opened up. I entered the trial and went into complete response. I have remained there now for over four years. I was receiving infusion for 3 weeks in a row, then a week off for my blood to recover. After a bit over a year in remission, I dropped to treatment every two weeks. Another year after that, and I went to single monthly treatments, and scans are still clear. Where we go from here is anyone's guess - we simply don't know, as we are experimenting.

Be careful with all alternatives, and please run them by doctor! Immune boosters are fine, but skipping sugar has zero value. Why? Our blood requires sugar for cellular and organ function. Our blood sugar level is very closely regulated or we become diabetic, or hypoglycemic. The same with alkaline water and other supposed cures. If we were in a Petrie dish, all of this might work, but our bodies function in a very narrow and precisely regulated range. If we starve the cancer, we also starve our body - there is simply no way around this, since the cancer is a part of our bodies. Now, targeted therapies like Romidepsin single out the tumor cells for destruction and basically leave the healthy tissues alone.

Here is a T-Cell Lymphoma presentation that was put on by my doctor, a T-Cell Lymphoma specialist at Fred Hutchinson: http://www.presentme.com/audio2012/20121111LRFShustov/

Yes, CSN is not asy to find replies on. Best to begin your own thread and check it daily for posts. Thank you, as prayer has sustained me.

Jim